Cerebral amyloid angiopathy

yes i would welcome any insight. as far as nearby help, not sure. she is not comfortable with sharing this with anyone at the moment until we are more knowledgable

Hi That’s understandable.How old is your wife?Has she had a bleed or Just an MRI diagnosis? I have just tried to love and care for my wife and do more things together!Appreciate every day!!Blessings

Bless your heart. My mom had/has clusters of bleeds. Her Mayo doctor told us that the best medicine for her was to use her brain, like puzzles, games, cards, etc. to keep it sharp. She doesn't (never did) like any of that stuff. He also told her dancing was very good for her (balance). He said spending time with her peers was also very good for her. That is the main reason we put into Assisted Living (after more bleeds 4 years ago) where they have every amenity imaginable. Unfortunately she doesn't take advantage of many of the extras. For the most part, most people would never know Mom has a brain issue. She can talk to anyone about anything and appear 100% normal. Her weak areas are not knowing a box of Girl Scout cookies isn't $300.00. Not always knowing day and times. She has little to no strength in her left hand and when she gets tired she walks towards the right. She may even walk into the wall. But, that is a sight and balance issue. Other days she can have a very purposeful walk, straight ahead. Her cognitive thinking can be challenging at times. She always thinks people are stealing from her. She used to fiddle (obsessively) with things like the door lock, garage door opener, clothes washer, thermostat, etc. Dressing sometimes can be a challenge. At times her dining skills are not too good, mostly because of her site. But, I have seen her eat coleslaw with her hands. I got her special spoons (larger and bends to the side) that the Assisted Living sets for her now, and they cut up her food to manageable sizes for her. The most important thing we find is the importance of her getting a good amount of rest at night. She is on a low dose sleep aide, which has been helpful. It was usually late at night when she would do some crazy things, like tear apart every drawer, think she saw a kid in her room playing, etc.. Honestly though, she has been much better for a much longer time than we anticipated ten years ago. Everything is manageable. She loves to go places, so we take her to concerts and out as often as we have time for. We just don't take her shopping too much. She wants to buy "EVERYTHING!" Next Thursday when I take her to get her hair done, I'll have to discreetly discourage the salon from allowing her to spend $500 on shampoo she doesn't need. Friday we will take her to see a country music singer. She loves concerts! No one will know this beautiful woman has a brain issue.

We, too, don't opening discuss our mom's condition with people. Allowing her to retain her dignity is important to her and to us. It is, however, turning into being a problem by not being more open and honest. They know she has CAA, but still believe Mom's words when she says she does everything on her own and that she is well enough to move home, but us rotten kids won't let her. On the other hand, we shouldn't have to advertise that she flushes clothing items down the toilet, and has become a master at lies. Her favorite pastime is gabbing on the phone and she has to have something to talk about! LOL She is not likely ever going to be able to live on her own, but we keep the house for her so she has something positive to dream about. However, she often can't find her way from one room to another. She needs 24 hour care.
I wrote more about her/our experience below.

Hi All I’m thankful for any experience’s That each of
You can give!My wife has had a number of smaller bleeds from 75on the only signs where confusion She has some depression problems and I chalked the confusion up to that. Then last May She had 2 large bleeds a month apart that’s when she was diagnosed with CAP She is now 79 and is having the odd small bleeds but is still in very good control except she confuses names and has issues with mechanical things!Unfottnatly no one seems to know where this goes except to say it has been confused with Altzheimers
Blessings

thanks god bless

hi she only 72 and has been a caretaker most of her life hope i'm now able to take care of her she has not had a bleed yet trying to learn all i can thanks for the reply god bless

Excuse my typing .....just had rotator cuff surgery.

I have been a high preformance fitness athlete me whole life....now 70. this past August i experienced double vision and saw my eye doc and had an mri 7 days after the double vision started. result amyloid angio.....and “mini.” stroke, two docs indicated no angiogram necessary.

i train very hard and think that caused it....after an extremely intense workout. They are not sure but put me on Norvasc...BP is now less than 120/80.
my only guidelines are to take the BP med and keep exercise HR less than 85% of max. 220-age x 85% is quite different than Karvonen method. i have been released and have a check up in one year.

i am a masters degreed exercise physiologist and feel i need better information. 220-age or karvonen work for cardio but not weights. i don’t work hard enough no to go to valsalva. i am gradually increasing my workouts.

i went to the Texas Stroke Institute which ranked high.

hope this helps you some....I am trying to find a PT TEAM with more expertise with a guy like me.

THX. After reading other comments, all which were suggesting eminent death from this problem......my docs, at Texas Stroke Institute, suggested no such thing. I was told not much is really known about this issue, although dementia may be related in some cases. I had two small ruptures which were initially thought to be brain tumers hours before I was sent to TSI.

Hi @caddo21, welcome to Connect. I thought you might appreciate this in-depth journal article about CAA http://jnnp.bmj.com/content/88/11/982

I didn't understand a couple of terms in your first post. You said "220-age or karvonen work for cardio but not weights. i don’t work hard enough no to go to valsalva." I'm unfamiliar with the Karvonen Heart Rate Calculator vs 220-age rate calculator. Is one better than the other? Do you need a heart rate calculator for weight work?

I also had to look up Valsalva maneuver https://en.wikipedia.org/wiki/Valsalva_maneuver. How do you use this to monitor your fitness level?